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Posts Tagged ‘Santa Cruz Alzheimer’s Association’

Turning Nursing Facilities Into a Home

At our last writing support group for caregivers,  the subject of nursing facilities arose, threaded with guilt for “putting mom or dad away.”

I speak from my own experiences of having my mother in a nursing facility  during the last one and a half years of her life.  I  did not put her away.  During her last stages of Alzheimer’s, it was time for someone with more capability and expertise to take over caregiving. I was down to 94 pounds and couldn’t turn her over due to retina problems.

I became part of this family of professionals at the nursing facility.

As starters, I did their bulletin boards and the front counter with a holiday theme every season. The staff was delighted to get off the elevator and be greeted with an attractive bulletin board or a flower arrangement or a poem.

I visited my mother to feed her at lunch and my brother Paul did the dinners.

I wheeled all the others into the solarium for their meals and after feeding my mother, I fed others.  I helped to pass their lunch trays to those who were bed-ridden. Sometimes, I took their laundry and had the residents do the folding after their lunch in the Solarium.  So I knew the other residents on my mother’s floor. Paul did the same.

I left treats in the nurses lounge to show my appreciation.

When I saw a need for change, I  got involved. I wanted each staff member to see my mother not only as a resident,  but as a family member. I wanted  each staff member to care deeply , not only at a physical level,  but at an emotional level. I wanted each person to look forward to work and to feel pride  and joy. Through the director, I conducted training workshops for all the staff at each shift.

They  brain-stormed on how to become happier and more efficient in their work. This is one of the results of our brain-storming. This list was posted on the wall in the lounge.

I asked each staff member to work on one area of change. We listed these on a chart and left them on the wall in their lounge. We had follow up sessions and they bought into this, with full force and began to work on their own individual areas of need . Some were simple: Wait until  residents swallow their food before putting another spoonful into their mouths. Know each person’s name. If  a resident was a  former doctor,  call him or her by their known title instead of  Papasan or Mama-san.

We learned to dignify each patient who was under their care. Eventually, we all transformed the floor into a family unit and soon other floors began to follow suit. They got competitive in a good way, each trying to be the best in human care. We ran a door decorating contest for each resident during Christmas for families.I played my flute badly and they applauded and one residents asked if I had a CD she could purchase.

Yes, I had to ignore that feeling that arose at times: I’m paying close to $6,000 a month and why should I be doing all this work? Because it needed to be done for the sake of my mother. After my mother and I left, another family member continued what I had started.

So, no, I didn’t put her away. I went with her.

During the one and a half years, I initiated the removal of one health aide after she poured scalding hot water over my mother during her bath. You  can say I became a sort of watchdog.

On the day my mother died, I came out of her room and the entire staff stood in a line against the wall outside my mother’s room. They had tears on their faces. We hugged each other without saying a word. This is what families do.

To be continued in my next posting: The entire staff brainstormed and made a  Let Me Make a Difference list of commitments and a I Am Somebody list of requests from the voice of the residents. These became permanent on the wall of their lounge.These two lists will be forth-coming.

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I know I’m in Hawai’i:

Upon arrival at Honolulu Airport, I went straight for the luggage cart with my $4.00 in hand when a local man approached me with , “Don’t waste your money, there are lots of carts on the sidewalk, go get one. ” The sidewalk was empty. So back to my $4.00 to get my cart. He came to me with his cart and said,”Here, use my cart. I’m meeting a friend and I don’t need this. ” I took his cart and said, “I know I’m back in Hawai’i” and thanked him, a complete stranger.

Driving on our freeway at 50 mph speed limit, waving to drivers who allow me space to change lanes, toots from others thanking me for same. We wave a lot of thanks and you’re welcomes on the road.

I know I’m in Hawai’i:

At the formal Alzheimer’s fundraiser event at the Coral Ballroom at the Hilton, the Director of Alz looked at my outfit, chose a red floral lei to match my black and white outfit. I didn’t get a standing ovation but I saw the mayor and U.S. Senator wipe tears from their eyes so I settled for that. At another  session, a person born in my hometown of Kapoho, now covered by lava, sat in the front row. I love the fresh flower leis I’m greeted with at each event.

Only in Hawai’i:

In Hilo, a waitress greeted me with a hug, “I remember you from last year. You’re allergic to MSG.”

I had my nails done and the Vietnamese owner greeted me happily with “Hello Frances,” followed with “Is everyone in Sacramento treating you good?”
I couldn’t remember his name, or the last time I was there.

One night on Maui, my friend Weesie made fresh Maui grown pineapple ice-cream from scratch.

On every island at Safeway checkout, my last name is pronounced correctly when they look at my receipt before handing it to me.

This past week, I had a standing room only session…I had requested a mike and a podium. I got a hand mike but no podium. I can’t handle a hand mike, notes and pages of poetry from my books with two carpal tunneled hands. I need a podium, I said. Person in charge stacked six chairs as a podium. I gulped and said “No, let’s see if you can find me a small table and I’ll look for a box.” Audience kept waiting.  I found an old, dilapidated cardbox box and got my podium.
Only in Hawai’i.

The vastness of space, still untouched by man’s cities and concrete in many parts of the islands arouses that passion that we need to keep our planet as it was at the beginning. Endless blue skies with white cumulus clouds, white crested waves against shorelines, banyan trees too large for my arms to go around, awakened by cardinals and mynahs as they begin their day and mine, plumerias and orchid blossoms waiting to be draped around someone’s shoulders…I sit and feel such  poignancy as beauty and fear intermingle…fear of losing all this beauty someday. Fear that generations from now, people won’t have a clue of what I’m enjoying today here in Hawai’i.
But for the time being, Hawai’i is surely the land of Aloha.

(photo proudly taken at Kahala, Oahu by me.)

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Sons as Caregivers for Mothers

Someone recently asked me whether I knew of sons who are caregivers for their mothers.
Let me introduce you to three male caregivers through their own voices.

Red Slider, poet/writer, was the sole caregiver for his mother Isobel for over ten years. The following excerpt is from his ‘Notebook #1’.

…Half-past-three-with-searchlight: Even so, she warns from somewhere in the lightless muddle, Don’t hurt me! I check my defenses. Mom, I’d never hurt you. But I know I do,
a hundred times every day. Pouring her hand into the sleeve of her robe, patting her on
the shoulder after pushing the chair up to the table, a sock-snag on a toenail (and when,
I wince, should I treat her to the agony of cutting them?). A simple difference, the
gradient a couple of molecules make scurrying one way or the other over open skin
registers like a shard of ice drilled through her chest, my fingers just grazing her throat
throws her head back against the chair, the last button on her blouse is lost and I will
have to start over…

by Red Slider,
first published in Andre Codrescu’s _Exquisite Corpse _, issue 4, April, 2004.
His entire Nightbook #1 and #2 will appear in my forth-coming book: A Caregivers’ Voice: Breaking the Silence Through Writing.

The Day You Became Isobel

Not on the days you lost your keys,
or the words you couldn’t quite recall,
or the puzzles unsolved in the Sunday Times;
nor, when the refrigerator got lost,
or the steps home unretracable,
or the faces of your children unrecognized.
It was on the day I returned to your name
for the sake of my memory as much as yours.
I said, ‘Isobel’ to remember the you of you,
and whenever I spoke about you to them,
or to myself about you; or called out to you,
“Isobel, it’s time for lunch. Isobel, I’m here.”
That was the day you become so much more
than the ghost of a ‘changed person’,
a ‘she was’ stuck in my native thought;
more than that, so much more than ‘mom’.

By Red Slider

(From my soon-to-be-published book, A Caregiver’s Book: Breaking the Silence Through Writing)

Rod, is also the sole caregiver for his mother. He warned me before my session that he doesn’t write. Yesterday, he emailed over 30 poems written during a span of 3 months. Rod’s poems tell a story of his own development as a caregiver son. “What Do I Feel?” is the first poem he wrote at one of my workshops. “To My Mother” is one of the 30 poems he recently sent me.

What Do I Feel?

What do I see?
Do you see what I feel?
I feel more than you can ever see.
It hurts to feel,
I feel too too much,
Minutes become hours,
Hours become days,
Days become years,
Years become a lifetime!
So sad to see,
So sad to feel,
I wish to feel nothing!


To My Mother

So many years ago
You gave me life
And the bond was made.
This life to see, to hear,
To taste, to touch
But the greatest gift,
You allowed me to feel.
,strong>
Through this deepest darkened night
I will hold the light
To take away all your fears.
Just know I will always be near
Through this tangled webbed maze you travel.
Have no fear, I will always be near.
I will hold this light steadfast
To make everything clear.
Just know I will always be near
Always near, no fears.

By Rod Masumoto

Caregiving takes on such an intimate role that for many sons, the act of bathing mothers are very difficult.

Steward, whose name I’ve changed, felt a lot of anxieties when he had to bathe his mother for the first time. “I discovered my sexuality is in the mind” he said. “ I was so scared I would be sexually aroused. Do you know what beast that would turn me into? When it didn’t happen, I felt such relief.”

I sent the following email to a bachelor son, caring for his mother.

“You need to relax and just think of her private parts as just another part of her body…like her hands or face. It’s all very natural. I know you feel uncomfortable about all this and it’s understandable but see if you can reprogram your mind and detach your thoughts from any sexual innuendos. She’s a woman who needs to be bathed and cleaned. If you feel uncomfortable, those feelings may be transferred to your mom.”

(I gave him specific instructions on bathing and cleaning a woman.)

I have seen sons openly weep for their mothers out of love and helplessness. And I have seen them take full control and become competent  and compassionate caregivers.

Mother Into Child, Child Into Mother

The same umbilical cord

That once set me free

Now pulls and tugs me back

To where I had begun.

There must be hidden

Somewhere, a gift very divine

In this journey back.

frances kakugawa from Mosaic Moon: Caregiving Through Poetry

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Alzheimer’s Association presents: Frances Kakugawa “Caregiving Through Poetry.”

Santa Cruz  Cable TV

Channels 27/73

Thursday/Saturday at 6 p.m.

May 27/29

June 17/19

This is a half hour version of the presentation Frances gave at the Santa Cruz Alzheimer’s Association.

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A friend asked me once, “What will you do when you’re 88?” And this was my answer:

Becoming 88

I will have a love affair
That will leave me trembling
On a windless day.

I will drown in Puccini,
Mozart, Verdi,
Tidal waves roaring
Inside of me.

I will feel the brush strokes
Of Van Gogh,
Clawing, bleeding
My  inner flesh.

I will be Shakespeare
Vibrant on stage,
Rivers rushing, splashing
Over moss and stone.

I will become soft,
Sensuous, wet,
Against your skin,
Silk against steel.

When I am 88
I will still be woman.
Yes!

This past week, I heard stories from caregivers who took my poem beyond its art form into real life.

One caregiver told me, “My father died three years ago and my mother, who’s 88, has a boyfriend. On his 86th birthday, he bought a Porsche and they go riding a lot. She’s so happy and confided that they are connected in all aspects.” That must mean trembling leaves, right?

Another caregiver’s mother is in a nursing facility and believes one of the male residents is her husband so she holds his hand and is simply happy to be there with her husband. And they have become a twosome.

I hope to hear more beautiful stories from my readers.
As for me, I hope when I’m 88, someone will be out there so I can say, “Ah, I wrote about this once.”

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The Presence of my Mother

At the Santa Cruz Alzheimer’s Association  conference a few days ago ( read my last blog), I received many comments after my presentation. I had read a few poems about caring for my mother who had Alzheimer’s disease. A woman came up to me and said ” I heard your mother’s voice while you read your poems. I felt her in the room.” Some minutes later, another woman told me the same.

That’s incredible, isn’t it? Two women from California, knowing my mother’s voice and feeling her presence …to be so spiritually connected to someone they had never met or known since my mother  had lived in Hawaii her entire life?

That was very  comforting  and it made me smile and even chuckle. And I treasured that thought that she was there with me, laughing at some of her moments and events I had preserved  in poetry. There are so many days when I wish I could have one more day with her and I think I did.

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The Sea

I am the sea…
Mender of broken souls…

I file the edges of broken nails,
Torn and jagged by human toil.

I take the salt from human tears
And wash out grief and silent pain.

I flow the blood that has caked
Deep within each punctured wound.

I take the weary off their feet,
Freeing sand grains between toes.

Come, my child, and walk my shores…
I am Mender of broken souls.

Alzheimer’s Conference in Santa Cruz
( A Self-Proclaimed  Day of Fame)

I was invited to speak at the Alzheimer’s Association conference in Santa Cruz yesterday.

The Santa Cruz waves made me realize how much I miss the sea. There’s such a healing quality, watching  waves wash into shore, hearing the lapping of sea against jagged rocks and cliffs. So many of my  poems written in Hawaii held sea images and I’m sharing one with you.

The conference room was like a large dance hall with  rows of lights, spider-webbing the ceiling and walls. . . perfect ambience for slow dancing or a debutante’s ball.  When I arrived I was told the local community TV Channel would be taping my talk.

I was greeted by Francie Newfield, a way younger Meryl Streep.  She was assigned my personal hostess for the day. “May I call you my body guard?” I  asked her. “This is my one chance of telling my friends back home,  I am sooo famous in Santa Cruz, I was assigned a body guard.” She protected me from all the fans eager to purchase my book.This is where fantasy ends.

A few minutes before my body guard introduced me, I saw the woman working her TV camera and I heard her mutter, ” The lighting’s so bad in here, her face is full of shadows. This is bad.”  What? I went up to her and whispered, “Oh, no, you can’t make me look ugly, now.” She looked at me and asked, “Are you Frances? Oh, I thought that woman up there was you.” She gave me a good look and comfortingly said, ‘It won’t be a problem. Just stand up tall up there.” I guess my face is flat and I don’t cast shadows.

The audience was wonderful and receptive with laughter and tears. My poetry and comments centered ,as always, on retaining human dignity in our loved ones and in ourselves because whatever we do to others, we do to ourselves.

We spent the last twenty minutes writing. I could have heard a pin drop as they wrote, all 200 plus participants.

One man touched my heart with his poem, “I want to turn the clock back five years. Five years, to do it over again. ..”

A young lady thanked me for busting free, all those thoughts and feelings deemed taboo, in caregivers.

The artist in caregivers,  understood how poetry allows us to turn a disease as devastating as Alzheimers’, into beautiful art form.

But it was Richard, the maintenance man who tugged the last string of my heart. The PA system was turned on the entire floor, in adjoining rooms and in the bathrooms. So if you were in the bathroom during my presentation, you would have heard my poetry on the john.

Richard told me he heard my talk while working on the floor and thanked me for my pig pen story. “I like how you put yourself together at the pig pen. That was good.” So Richard, I’ll keep telling that story.

I often wish I had a magic wand to let caregivers  see what awaits them at the end of their journeys. The most  incredible transformation of ourselves as human beings and the deep and loving relationships that develop between caregivers  and their loved ones. But this is one journey that can’t be fast-forwarded.

And that was my day. Thank you so much, Dale Thielges and staff, for a meaningful and fulfilling day. To Francie  Newfield, for  body-guarding the “famous.” And to all the beautiful people at the conference, my heart is with you.

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